We Can’t Treat It If We Don’t Test For It

The Federal Child Abuse Prevention and Treatment Act (CAPTA), is designed to “address the needs of infants born with and identified as being affected by substance abuse or withdrawal symptoms resulting from prenatal drug exposure, or a Fetal Alcohol Spectrum Disorder.” The Act is an effort to, in part, address the health and substance use disorder treatment needs of the infant and affected family or caregiver and to develop the plans of safe care for infants affected by all substance use (not just the use of illegal substances).

But how? How do we “address the needs of infants born with and identified as being affected by [misused substances]”? There are no federal guidelines. Every state has its own rules about the Act. Some states require reporting to their version of Child Protective Services of suspected prenatal drug use; some require drug testing for either the pregnant parent or the neonate; some criminalize prenatal drug use. And, now, there’s a move afoot to turn a blind eye or at least to not use the best tools at one’s disposal to determine the needs of the neonate.

Some states specify what can be tested (urine, meconium, umbilical cord, blood) and when concerns rise to the level of requiring a test. Typically, testing is done when there is minimal or no prenatal care, self-report or history of substance misuse by the pregnant person, or birth of a previous child with neonatal abstinence syndrome (NAS) or Fetal Alcohol Spectrum Disorder (FASD). There’s even at least one state that requires testing of neonates for misused substances if a parent has a tattoo. Yikes.

I don’t have the time or energy to delve into all the ways that these guidelines can go sideways, but let me highlight just a few:

• First, people who misuse substances aren’t known for their veracity, so asking them if they misuse substances may not tender an honest answer.
• Next, regarding FAS, the CDC, using medical and other records, has identified about 1 infant with FAS for every 1,000 live births in certain areas of the United States. March of Dimes, however, reports that up to 1 in 20 children in the United States may have FASDs. That’s a 5,000% difference! That means that a huge – HUGE – number of babies aren’t being diagnosed with FAS/FASD at birth.
• CAPTA says that one of the three possible report types is for “Newborns with Controlled Substances or Controlled Substance Analogs in Their Bodily Fluids (may be relevant when substances other than alcohol have been used).” The emphasis is mine. The implication of this language from CAPTA is that newborns will NOT BE TESTED for alcohol. But, you know, if a newborn is diagnosed with FASD, then a report would be made. Except refer to the bullet point above: we are missing 5,000% of newborns who should be and will eventually be diagnosed with FASD.

We can do better. We have better tools and more knowledge to help “address the needs of infants born with and identified as being affected by substance abuse or withdrawal symptoms resulting from prenatal drug exposure, or a Fetal Alcohol Spectrum Disorder.”

The most obvious and vast improvement is to use umbilical cord testing for newborns. It’s easy to collect; it can be collected on every neonate and stored until the time it’s needed – or disposed of because it isn’t needed; and it can be tested for all misused substances and analogs, including alcohol and cannabis.

Will a positive test result absolutely garner a diagnosis of NAS or FAS/FASD? It absolutely will not. But it could absolutely make a difference for the baby. Testing should never be a gotcha! We say that we believe that addiction is a disease, yet in everything we do – even not testing for misused substances because we’re afraid of the outcome – says that we don’t believe it. If this were any other disease carried by the birthing parent that could affect neonates – cancer, diabetes, heart disease – any other disease that we had a simple test to determine possible consequences, we would NEVER disregard it. We’d move heaven and earth to be sure that we are addressing the needs of infants. Why is this disease, the disease of addiction, so different?